Patients, the public and the uses of big data; practical engagement, education, scrutiny and leadership

现有的健康数据的类型和范围正在迅速增长，将这些不同来源联系起来并用来产生新的见解和理解的方法也在迅速增长。因此，大数据和分析改善生活的潜力也呈指数级增长。但在这种日益增长的潜力的同时，围绕着合法性、正当性以及对数据的用途、操作方式和控制方式的理解，也面临着越来越多的挑战。媒体对大数据的兴趣也与日俱增。媒体倾向于关注健康数据的风险，报道主要基于增加数据和使用带来的负面方面，如风险、威胁、剥削、黑客攻击、盗窃和丢失。然而，媒体上的这些主要是负面的信息是针对公众的，而健康数据是关于患者的。这与以下观点形成鲜明对比，尤其是患者的观点，即有重大的好处需要同样充分地论证，以便患者和公众能够在知情的情况下，平衡地选择将健康数据用于个人和社会利益。目前，几乎没有对患者和公众的意见进行量化的工作，这对LIDA进行的所有工作都构成了重大风险。Care.Data的崩溃就是一个例证，在这种情况下，公众对使用健康记录的主要不安情绪没有充分征询公众对如何使用数据和不应该使用数据的看法，导致健康数据研究大幅冻结。尽管数据现在在研究系统内的移动更加容易，但人们的担忧依然存在，公众对他们的数据被如何使用的担忧可能会再次阻止大数据健康研究，这一风险越来越大。随着国家数据选择退出计划从2018年3月开始实施，以及《一般数据保护条例》(GDPR)于2018年5月通过，这些担忧可能会加剧。我的工作方案将寻求纠正这种平衡，方法是对公众对使用“大数据”的意见进行研究。然后，我将使用所产生的证据来为发展一个消息灵通、连贯但独立的患者声音提供信息，该声音将监督LIDA在英国健康数据研究优先领域开展的所有工作。我将发展的知情和独立的患者和公众代表机构将直接参与指导和监督LIDA投资组合内的研究，并寻求缓解公众担忧可能给大数据分析带来的任何风险。这一奖学金将使我能够扩展和加强我在利兹大学已经开展的工作。例如，我已经在领导寻求将患者置于英国结直肠癌情报中心计划中心的工作(资金来自340万GB的赠款，我是该项目的联合调查员)。该中心涉及创建和利用一个大型存储库，其中包含与结直肠癌相关的所有英国数据。考虑到关于这一人群的数据的数量和范围，我们认为处于疾病风险中或被诊断出患有这种疾病的人是其核心，这是绝对重要的。

The types and extent of health data that exist are growing rapidly, as are the methods via which these disparate sources can be linked and used to generate new insights and understanding. As a result, the potential of big data and analytics to improve lives is also increasing exponentially. But alongside this growing potential there are also growing challenges around the legality, legitimacy and understanding of what is done with the data, how it is done, and how it is controlled. There is also an ever-increasing interest in the media about big data. The media tend to focus on the risks of health data, with stories which are largely based on the negative aspects which increased data and usage brings, such as risks, threat, exploitation, hacking, theft and loss. However, these largely negative messages in the media are targeted at the public, whereas health data is about patients. This contrasts strongly with the views, particularly of patients, that there are significant benefits which need to be equally well argued, so that patients and the public can make informed, balanced choices about the uses of health data for individual and societal benefit.Currently little work has been undertaken to quantify the views of patients and the public and this poses a major risk to all work undertaken in LIDA. This is exemplified by the care.data debacle where major public disquiet about the use of health records without adequate public consultation and understanding of views on how data should, and should not, be used led to a significant freeze in health data research. Although data are now moving more readily within the research system, concerns remain and there is a growing risk that public fear about how their data are used may again halt big data health research. These concerns are likely to increase with the planned implementation of the National Data Opt-Out scheme from March 2018 and the adoption of the General Data Protection Regulation (GDPR) in May 2018.My programme of work will seek to redress this balance by undertaking research into public views on the use of 'big data'. I will then use the evidence generated to inform the development of a well-informed and coherent, but independent, patient voice that will oversee all work undertaken in LIDA spanning the priority areas of Health Data Research UK The informed and independent body of patient and public representatives that I will develop will then have direct involvement in steering and overseeing research within the LIDA portfolio and seek to mitigate any risks that public concern may bring to the big data analytics.This Fellowship would allow me to extend and build on the work I am already undertaking at the University of Leeds. For example, I am already leading work seeking to put patients at the centre of the UK Colorectal Cancer Intelligence Hub programme (funded by a £3.4 million grant on which I am a Co-Investigator). This Hub involves the creation and exploitation of a large repository of all the UK data relevant to colorectal cancer. Given the volume and scope of the data held on this population we believe it is absolutely fundamental that individuals either at risk of, or diagnosed with the illness are at its heart.